27 July 2014

Good Things Come in 3s - We're 3 Today!

Good things come in threes! It's been three years since three house/bed-bound ME sufferers launched Let's do it for ME to highlight and support the work of Invest in ME, crowdfund vital research into the disease and help the charity progress its plans to establish the first centre of excellence for ME in the UK.

Lots of good things have happened in the last three years thanks to your support. If you have ever donated, shared or helped us in any way, please take this time to congratulate yourself for the part you have played in the following achievements:

  • Building of team work and a great community spirit, not least our planning group as people, inspired by the aims of the cause, got together to make it a success.

  • Increased awareness through all sorts of creative fundraising events, poems, books, music, crafts and audio plays - ldifme.org, facebook.com/ldifme

  • New researchers bringing their expertise to the field of ME research, including Professor Simon Carding, leader of the Gut Health and Food Safety Programme at the Institute of Food Research, UEA, and Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, UCL, who pioneered the use of B cell depletion therapy (rituximab) to treat rheumatoid arthritis.

  • Funding of the foundation gut research project and a PhD studentship at UEA as well as the initiation of this work - recently featured in the Institute for Food Research Newsletter.

  • Funding and initiation of preliminary B-cell study for a UK rituximab clinical trial at University College London.

  • The three most successful IiME international biomedical research conferences and pre-conference research meetings yet, fuelling collaboration between researchers and educating health professionals. This year, as well as a CPD accredited conference DVD (not yet released), IiME have produced a Booklet to educate GPs and other healthcare professionals about the current state of research into ME that includes a summary of the research meeting and conference by Professor Jonathan Edwards.

Also in progress:

  • The initial target for the UCL/IiME rituximab clinical trial is 98.9% funded, so close! - ukrituximabtrial.org

  • Invest in ME and Let's do it for ME are also working toward further research projects that will complement the existing ones, and our initial plan of a centre of excellence is still the main target of our work.

Our ability to initiate research projects and progress plans for a centre of excellence is due in no small part to the many people who have taken the time and effort to get involved so thank you..  and Happy Birthday!
from all at LDIFME and IiME

17 July 2014

Remembering Rob

Our thoughts are with the loving family of Robert Doyle, who sadly passed away on 6th July 2013. We first published this blog in memory of Rob on 4th May 2014, when his mother Diane had said, “Sunday is going to be hard as it is the first time we have spent his birthday without him. He would have been 31”. 
Robert Doyle 4.5.1983 - 6.7.2013
Rob fell ill with myalgic encephalomyelitis (ME) around 10 years ago and became well known by the name of “Knackered”in the online ME patient community. He helped to establish and run an internet forum called People with ME. This announcement on the forum was posted on Invest in ME Facebook group last year:

It is with great sorrow that we announce the loss of one of our own. Knackered, who was instrumental in establishing and running the People with ME forum, passed away on the 6th of July 2013.

A large gathering of family and friends including three members of the forum attended his funeral on July 17th. For most of the over 200 standing room only guests his passing came as a shock. For those of us who became his close friends with daily contact, we knew he had suffered severe complications over many months and had great difficulty in receiving proper medical care.

For the family and friends who knew him, Robert Doyle was bright and funny, thoughtful and intelligent, with a mischievous sense of humour, a ‘wind-up-merchant.’ Often wise beyond his 30 years, Rob was far too young to be lost to his family and friends who miss him terribly.

Rob’s sister has set up a page for charitable donations in his name at:


We miss our dear friend Robert Doyle

Tino, Joy Scobby, Beorc, Polly, Snow, Stuart, Flex, Hatshepsut

Rob at a family wedding
Rob's mother Diane knew that the forum had members from all over the world and that Rob made some lovely friends, not all with ME. Her response to the tributes from his online friends:

“First of all I would like to thank you all for being good friends with Rob, I don't think he realised how well thought of he was. Rob started with ME when he was about 21. At the beginning he coped going part time to uni and part time work. As time went on Rob's life changed, as you all know what it's like, never going to family parties and get-togethers. Most of his life was four square walls. He described his illness as having flu all the time. Last year he heard about a doctor in the Netherlands who was doing good things with ME sufferers. He was looking forward to going with his dad to see if anything could be done. Then at the beginning of this year things changed, he was in terrible pain he tried A&E, local doctors and even went private. He would have done anything for relief but none came. His own doctor more or less threw him out and said there was nothing wrong with him. He tried everything to no avail. No-one deserved to be treated this way. Just before he passed, he read about Lyme and wished he had known about it earlier. It's a shame he found no peace. Rob never lost his sense of humour. He was funny, generous, would do anything for anyone, and was looking forward to coming to the coast to live, but the NHS took everything away from him. All I can say is fight the NHS and the doctors try and stand up for your rights, and now and then think of Rob.” 

Rob with sister Rachael
Diane said that Rob had “asked that he didn't die in vain”. His sister Rachael created a JustGiving fundraising page and Facebook group and Rob's wonderful family, including sister Jo Ann, niece Lucy, and their friends set about a number of ways to raise funds for Invest in ME. This included selling the Christmas cards and calendars produced by our campaign in support of Invest in ME, wristbands, running raffles and collections at family events and, “anything else I can think of to make money for such a deserving cause, we just want to do something for others who suffer just like Rob”. She wrote:

In July I lost my younger brother Robert who suffered from ME. We're trying to raise money for a great charity that doesn't get the publicity it needs to raise the fund that so many deserving people in this country, and others, need.

ME stands for Myalgic Encephalomyelitis, And there are over 250,000 sufferers of ME in the UK alone, with around 25% of them being severely affected, in other words they're bed or house bound. with your help, we can help these people, and the their families.

Your donations will be a BIG help for such an unknown cause, no matter how small.

People who suffer from Myalgic Encephalomyelitis (ME) are forced to live in a bubble. Invest in ME campaign to burst that bubble by raising awareness and funding high quality biomedical research into ME. To those donating, “ I cant thank everyone enough, this is a charity that is so close to us as a family”. 

Our team members join Invest in ME in expressing our thanks to Rob's family for allowing Robert's memory to be used to raise awareness of ME and help others. Our hearts go out to them. Rob is also remembered in the Spring 2014 Journal of Invest in ME and the 2014 Invest in ME Conference DVD (IIMEC9) is dedicated to his memory.

Robert Doyle - forever in our thoughts.

Robert Doyle 4.5.1983 - 6.7.2013

13 July 2014

A New ME by Barry John Evans

Is available in paperback and also kindle...

Hello everyone, I thought you may be interested to hear that I have had a book published! It's about my journey so far with M.E. whilst I also talk about my struggles with autism and depression too. If you'd like to know a bit more then I've recorded a video which you can watch via this link: https://www.youtube.com/watch?v=eG8bCFpbseE

Also, if you'd like to purchase a copy then you can do so through the following links: http://www.amazon.co.uk/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403374862&sr=8-1 - this is the link for UK readers who would like a paperback. It's currently at £5.89

http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1?ie=UTF8&qid=1403374862&sr=8-1&keywords=a+new+me - this is the link for UK readers who prefer to read a kindle. It's currently at £3.06

http://www.amazon.com/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403375040&sr=8-6 - this is a link for everyone who lives in the US and would like a paperback. Currently at $8.71

http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-6&qid=1403375040 - Finally, this is a link for everyone in the US who would like a copy on kindle. It's at $5.19.

Also, if you buy it through this link then it generates an extra donation to Invest in ME at no extra cost to the buyer - http://www.amazon.co.uk/?_encoding=UTF8&camp=1634&creative=6738&linkCode=ur2&tag=ininme-21

It's also available in ALL countries and 10% of  ALL profits go to the charity "Invest in ME".

You can also check out the reviews on Amazon.

Hope you all enjoy!

Barry x

P.S. thought you might like to see a video I did for M.E. Awareness week on what's it's like to live with the illness: https://www.youtube.com/watch?v=TIvc_1SCKhI

5 July 2014

"Thoughts" 24 Rhyming Reflections of HME and CFS/ME by Helen Beeston

Helen Beeston has published a book of rhymes and is particularly keen to donate at least 5% of her proceeds to the Invest in ME Biomedical Research Fund. At least a further 5% will be donated to research into Hereditary Multiple Exostoses (HME), a condition that she was born with, resulting in operations from age 11 to 22. Helen's book is an easy and interesting read for friends and family, and will no doubt resonate will fellow "spoonies" out there.  Helen wrote:

Thank you for allowing me to add a guest blog. 
I have ME and have recently published a book about my journey. 
I wanted to tell you about it. It’s available in Kindle format and as a paperback from Amazon. At least 10% donation from royalties will go towards research (IiME and HME). 
Use the link below to Amazon, as that generates an extra donation to Invest in ME.

I've written some poems.
All printed in a lovely e-book
You’re welcome to take a look.
I read some out
To explain what my story is about.

It’s difficult to say how we feel,
Our symptoms are so very real.
At times we look well
Even if under a horrible spell.
I am sure that you will relate
And identify a similar trait.

I hope my humour will make you smile
And not run a mile.
They may make you feel sad
But hopefully only a tad.
Have handy some tissues
In case it opens any issues.

I may give you a tool
If you use it, that’s cool.
It’s very difficult to start
It needs to come from the heart.
It helps me make sense of the thoughts in my head
It could make you sleep better in bed.

Comments on the book received so far:

“Just finished your book it is really amazing, you should be really proud of it they are really great :) love the explanation really adds the personal touch :) xxx 

“just to say that I really liked your book and I could relate to a lot of what you said. We are always expected to be so upbeat in this society so people don't let on about all their fears,  unhappiness and feelings of inadequacy. Including so-called 'healthy' people! I think you are very brave to have written about your feelings - and a stroke of brilliance to do it in rhyme - it makes it very accessible somehow. Thanks again for your book!”

5 star rated “An excellent read. My son has the same condition so I could relate to it. I would certainly recommend”.

Congratulations Helen and thank you for supporting Invest in ME via Let's do it for ME! 

Remember that using this link to buy anything from Amazon generates an extra donation 
to Invest in ME at no extra cost to the buyer - http://amzn.to/1qwizdU

Thank-you for your support - Let's do it for ME!

*Let's do it for ME! is a campaign to help raise awareness of the work of independent UK charity Invest in ME (Research) and funds for the biomedical research into myalgic encephalomyelitis that the charity is organising and/or funding. Invest in ME is run entirely by unpaid volunteers who either have ME or are parents and carers of ME patients. They are driving the agenda of scientific biomedical research into diagnostic tests and treatments for myalgic encephomyelitis in UK in collaboration with international researchers of world renown - 2014 will be an exciting year for progress in M.E. research - you can help*

Let's do it for ME!
IiME/UCL/UK rituximab trial 
Invest in ME (Research)
Invest in ME International Biomedical Research Conference (IIMEC)